Support for families dealing with cancer and other serious illnesses (Part II)

Amanda White82 said:I’m not sure if this belongs in this thread—if it doesn't, I’ll let the moderator move it where it needs to go.
I was wondering, is it actually normal for a hospital to not release any test results or a breakdown of the procedures performed on a patient along with the discharge summary after they pass away?

The cancer diagnosis didn't even happen until they were admitted to the hospital, and then the patient passed away within 20 days.

Look, honey, if the discharge summary was written properly, it really should outline what those test results actually were.
They aren't obligated to hand over every single individual lab report separately, but typically, the summary covers all the diagnostic work done.

Regardless, you can absolutely demand they give you copies of all the individual findings—you have a right to them. Just cite the Patient Bill of Rights when you talk to them.

Send an official written request to get copies of the documentation under a formal release agreement.

I’m just so incredibly sorry for everything you guys are going through right now... I really hope some light finds its way to you during these tough stretches—you know, those little things that bring a bit of joy to you and your loved ones? They definitely exist... you just have to look closely enough!
My mom is battling ovarian cancer
Lately, the pain has been getting pretty intense. We actually went to the ER for pain management and sat down with her oncologist to talk about options, and they prescribed some Dorothy... but honestly, it doesn't seem to be doing much for her. They mentioned they can't even give her patches because she's still undergoing chemo?!
What have you all used, or what has worked for your families? Is there anything we could pick up over the counter or elsewhere?
Voltaren injections used to help her out, but since her platelet count is so low, they aren't recommending any muscle injections right now.

Hi everyone, sending you all lots of support and love... Sadly, I lost my mother to cancer when she was 49. This might seem a little strange, but I’d like to donate her wig—she only wore it a few times—to anyone who might not be able to afford one right now. I really hope nobody takes offense or thinks this is morbid... I know Medicare covers some things, but I realize that even a few hundred dollars out of pocket can be a lot for some people.

If anyone is interested, feel free to reach out here or send me a private message.

Hello everyone.

A family member has been diagnosed with colorectal cancer that has metastasized to the liver.

The treatment plan currently involves a cocktail of cytostatics combined with a targeted drug called Avastin.

We saw some initial improvement, but unfortunately, the disease has taken a turn for the worse regarding the size of the metastases.

Now, I understand that Avastin is a medication that requires specific approval from a commission.

If we run into a situation where it isn't approved, is it actually possible to obtain it privately here in the US?

I've heard that it might not be feasible—supposedly, only hospital physicians can issue private prescriptions, but they are strictly prohibited from doing so. The reasoning is that it leaves them vulnerable to lawsuits. A patient could potentially sue their hospital, claiming, "You didn't provide the expensive medication I am entitled to; you're just saving money by telling me it doesn't work anymore, yet by issuing a private prescription, you're essentially proving that the drug still has efficacy in my case and you were just cutting costs on me and everyone else!"

Then you have the media coverage, the legal battles, and all that, which effectively makes obtaining the drug privately nearly impossible.

So, how does one navigate this within the US healthcare system?

And if it can't be done here, how would one go about getting it abroad?

And where?

I realize this is an incredibly expensive treatment, but I assume the price fluctuates. Would it vary whether you are looking within the US or perhaps in a neighboring country?
Does anyone happen to have any information regarding prices, locations, or the necessary procedures?

I would truly appreciate any information you might have.

If things start taking a turn for the worse while on Avastin, then the drug isn't indicated anymore; at that point, the side effects outweigh any potential benefits, and there’s simply no reason to keep pushing it.
There are other treatment paths available, and one such option is the smart drug Erbitux, which shows excellent efficacy in patients carrying the wild-type cell mutation—something you can confirm through a k-ras test on a tissue sample.
There is absolutely no legal way to obtain a medication like that without a valid prescription.
Your best bet is to seek out a second opinion from a private oncologist.

Just so you know, Avastin is manufactured by Roche, and they have a major presence here in the States. Pricing fluctuates quite a bit, but you're looking at $20,000 or more per dose. Usually, if you work out a deal with the company regarding the volume you're buying, they’ll actually donate one dose for every batch you purchase.
Of course, none of this happens without the green light from an oncologist via a formal prescription.
Avastin isn't meant to be a solo act; it’s designed to be paired with other medications. On its own, it just doesn't hit nearly as hard as it does when it's used as part of the full clinical protocol.

During the period we were running combination chemo with Avastin, there was some actual improvement—the tumor actually shrank. After that, everything just stopped. But now, after a break of several months, the latest scans are showing that things have taken a turn for the worse.

The Erbitux/EGFR line of treatment is off the table because the K-RAS test came back positive for mutated cells.

Who exactly should I be reaching out to at Roche regarding purchasing Avastin? I'm wondering if they only have their main headquarters in Washington, D.C. (and if so, who specifically handles those inquiries), or if they have local field representatives available for discussion? I live in a small town, so I’m hoping there might be someone closer to my area.

It is somewhat encouraging to think there might be a way to negotiate for multiple doses. However, as I mentioned before, the hospital oncologists are refusing to write prescriptions for various reasons. I suppose that leads me to wonder... which private oncologists actually have the authority to write such prescriptions here in the US?
(I'm looking at the Cleveland or California areas, or even Washington, D.C., if necessary)

It seems clear to me that the Avastin isn't having much of an effect on its own. My thought process is this: if the insurance commission denies coverage for Avastin alongside regular chemo (though they probably won't deny standard cytostatics), I might try to source it myself and bring it into the hospital. It’s usually administered last in the infusion sequence, right after the standard cocktail of cytostatics is finished.

Angela Wright, thank you for sharing this information. I was wondering if you, or perhaps anyone else here, might have any insight into the possibility of sourcing a drug like this from abroad or within the surrounding regions? (Maybe Canada, Italy, Germany, Austria, Canada, Mexico, North Mexico, Canada, or the Czech Republic?)

Hey everyone, does anyone happen to know where I can pick up some oxygen for home use without having to deal with all the extra fees or surcharges?

goldenpanther14 said:Hey everyone, does anyone know where I can pick up some medical oxygen for home use without needing a formal prescription?

Try reaching out to the American Hospice Friends Association; if they have stock, they'll definitely require you to present a documented history of the illness along with a specialist's recommendation.
But look, if you don't have a pulmonologist's referral, don't go playing games with this. It’s not as simple as just slapping a mask on someone's face and flipping a switch. You have to precisely calibrate the oxygen dosage based on the patient's specific needs and follow strict protocols, because an overdose can actually burn the mucous membranes and end up making the patient's situation much worse.

Robin Sanchez2 said:The combination therapy using Avastin actually worked for a while—the tumor shrank. But then everything stopped. After a few months of nothing, the latest scan shows things are getting worse again.

The Erbitux/EGFR line of treatment is off the table because the K-RAS test came back positive for mutated cells.

Who should I reach out to at Roche to buy Avastin? Do they only have a main office in Washington, D.C. (and if so, who is the right person there), or do they have field reps I can actually talk to? I’m coming from a small town, so maybe someone nearby is available.

The idea that I might be able to negotiate buying multiple doses is encouraging. However, like I mentioned before, the hospital oncologists refuse to write prescriptions for these reasons. Which private oncologists actually have the authority to write valid prescriptions here in the US?
(I'm looking around the Cleveland and California areas, or even Washington, D.C.)

It's clear to me that Avastin alone isn't doing much. My plan is this: if the insurance board rejects Avastin when paired with regular chemo (though they probably won't reject standard cytostatics), I'll try to source it myself and bring it into the hospital. Usually, it's administered last in the infusion, once the standard cocktail is finished.

Angela Wright, thanks for the info. Do you (or anyone else) happen to know anything about sourcing this kind of medication abroad or in neighboring countries? (Like Canada, Italy, Germany, Austria, Canada, Mexico, North Mexico, Canada, or the Czech Republic?)

Contact headquarters in Washington, D.C.; they will direct you to the right point of contact.
Get a second opinion from at least two other places. One should be abroad, and the other should be from a local private oncologist.
(Dr. Cepulic, Washington, D.C.). It is crucial that these opinions come from doctors outside the Medicare system to avoid any conflict of interest. With those medical opinions in hand, if they show that the indication for Avastin still stands, you can put pressure on the review board.
Forget about trying to buy drugs without a prescription or taking matters into your own hands "under the table"—don't even let that thought cross your mind.
At worst, you have Dr. Cepulic, a private practitioner, who can write your prescriptions and continue your treatment privately.

I wanted to jump in here with a question too! After my radiation therapy, I lost quite a bit of weight—it was pretty intense—but then I was prescribed Megostat, which has been working wonders for me. It’s been a little while now, and I’ve already managed to put back on three hard-earned pounds! My local pharmacist suggested a substitute that costs about $283 per bottle, which sounds fine, but I’m curious if anyone here knows anything about this specific medication called Cachexan. Apparently, it’s manufactured in Poland, but since it isn't covered by Medicare, I went ahead and
bought it myself. If anyone has any experience with it, please let me know. Thanks so much!

My mother is currently on Megostat, but since it’s out of stock, we reached out to her wedding godfather—who happens to be a pharmacist—to see if there was an alternative. He informed us that Cachexan is an identical substitute for Megostat, just from a different manufacturer. This was further confirmed by both her primary care physician and her pulmonologist (my mother is battling lung cancer), so there really is nothing to worry about. You can feel free to stick with the substitute until Megostat becomes available again. 🙂

Rachel Williams said:My mom is actually on Megostat right now, and since it’s been out of stock, we went ahead and asked her godfather—who happens to be a pharmacist—if there was a substitute. He told us Cachexan is basically identical to Megostat, just from a different manufacturer. Both our family doctor and my mom’s pulmonologist (she's battling lung cancer, poor thing) confirmed the same thing, so there's really nothing to worry about! You can definitely stick with that until Megostat shows up again. 🙂

Thanks for the reply! I actually started taking it today myself—I'm dealing with tonsil cancer. Are you buying this without a prescription too?

Kate Diaz55 said:Thanks for getting back to me. I actually started my treatment today—I have CA tonsils. Are you also picking up your supply without a prescription?

We haven't pulled the trigger on buying it just yet. To be honest, Mom isn't struggling much with her weight right now; over the last year, she’s managed to stay steady between 120 and 125 pounds, regardless of the Megostat. Since it isn't an urgent necessity, she’s also resistant to us throwing more money at this—especially since her husband and I are already helping her out financially now that she's retired. But if things were different? We would have bought it in a heartbeat. When she first got home from the hospital, the Megostat must have been the only thing keeping her upright, because back then, she had plummeted to about 103 pounds.

Rachel Williams said:We haven't picked it up yet because Mom isn't really struggling with her weight right now—honestly, over the last year, she’s managed to stay steady at around 120-125 lbs despite the Megostat—and since we don't absolutely need it, she doesn't want us spending extra money on it. My husband and I help her out financially since she's retired, so she's pretty careful about that. But, if things were more urgent, we would have bought it in a heartbeat... especially since when she first got out of the hospital, it was probably the Megostat helping keep her afloat, because back then she had dropped all the way down to about 103 lbs.

I actually gained some weight back thanks to Megostat too, but ever since I stopped taking it, the weight has been slipping away again—I've already lost 3 lbs and I'm down to 110 now—so I definitely need to get back on it. My daughter and son help me out with everything since my Social Security check is barely even $300, so honestly, without them, I'd be toast! Sending all my best to your mom, and thanks so much for the reply!

This isn't even about my own family—it’s for a close friend... her grandmother is in the final stages of uterine cancer with metastases, and we're looking at zero treatment options left. The hospital is pushing for her to move into hospice care, but she’s digging her heels in and refusing. Now the family is scrambling to figure out how to get her morphine, especially since the GP is being completely unhelpful—if you can even call it "cooperating" at this point. I honestly don't see the logic in the lack of communication here. Is it actually possible to just pick up morphine at a pharmacy with a prescription from a private doctor, provided they present the medical history, just to give the woman some relief from this unbearable pain?

Sam Kim12 said:This isn't about my own family—it’s for a friend. Her grandmother is in the terminal stages of uterine cancer with metastases, and there's no medical intervention left to try. The hospital wants to move her to hospice, but she’s resisting. Now the family is scrambling to figure out how to get morphine, but apparently, the GP isn't being helpful at all?! (I'm not sure what the disconnect is there). Is it actually possible to pick up morphine from a pharmacy using a private doctor's prescription if you present the medical history, just so they can ease her unbearable pain?

Look, an anesthesiologist can write a recommendation for Durogesic patches and Tramadol upon discharge. Make sure the family insists on this when she's being released; the staff is obligated to provide that plan. Beyond that, once she's home, they can visit a pain management clinic where a specialist can prescribe the therapy and titrate the dosages. Those specialists can also teach the family how to adjust the dose up or down as needed and how to combine it with other analgesics.
Honestly, given how advanced the disease is, I strongly suggest looking into inpatient hospice care. Most people simply aren't equipped to manage high-level palliative care in a home setting.

Angela Wright said:Upon discharge, the anesthesiologist can certainly provide a recommended dosage for Durogesic patches and Tramadol—it’s part of the process. You absolutely have to demand that information during the discharge paperwork; they are professionally obligated to provide it. Furthermore, once she's home, you can visit a pain management clinic where they can prescribe specific therapies and fine-tune the dosages—they can actually teach you how to adjust the levels or combine them with other analgesics as needed.
That said, given the stage of this illness, I strongly suggest looking into inpatient care or some kind of facility—let's be honest, very few people are actually equipped to manage high-level nursing care within the confines of a standard home setting.

Thanks,👍

The anesthesiologist didn't write down a single thing for her upon discharge... she was actually released at her own request. I'll pass along the response to her shortly.😉

I am reaching out to all the kind souls on this forum to ask for some guidance. I am a 74-year-old man—a non-smoker and someone who abstains from alcohol—currently facing a diagnosis of pancreatic head neoplasia. I had always maintained a very stable weight, but after a sudden, unexplained period of weight loss, I decided to get an ultrasound and run some basic blood work. Everything seemed perfectly fine on paper, except for what showed up on the ultrasound. To be honest, the news was a total shock, and being hospitalized was quite overwhelming. Back in November, they had to implant an intrahepatic bile duct stent. Aside from taking Ursofalk, I’ve been told there aren't any other therapeutic options available to me. Surgery isn't an option because the tumor measures 36x66 mm. My only physical symptom right now is more frequent bowel movements; otherwise, I am not in pain. However, my doctor has informed me that in addition to lung metastases, there is also lymph node involvement—essentially telling me that my chances of survival are slim. I have a family, including a relative who has dealt with cancer themselves, so I haven't yet shared the true severity of my diagnosis or this specific situation with anyone. Has anyone here experienced something similar and found a glimmer of hope? I should mention that the metastatic markers haven't increased; they seem to be in a dormant phase. I would be sincerely grateful for even a single word of advice. Right now, I feel incredibly isolated—as if the healthcare system has essentially abandoned me. I just want to live.